As a preface for this post, I want to make it abundantly clear that I am not frustrated or angry with anyone regarding their response to my medical conditions. I feel like the most supported, loved, and prayed for person on the planet, and I feel nothing but absolute love and support from the vast majority of the people in my life. I am writing this as a way to address questions that people are probably thinking but not asking, or are asking with the absolute best intentions. This is not a rant post, or anything of the sort. I just want to offer truth and clarity.
Over the past four years, I have been on oxygen 24-7, been hooked up to a peg-tube for total nourishment, been connected to IV fluids via a port daily for several hours, and riding in a wheel chair when out in public. I have had several surgeries (one near-fatal), placing and removing ports and tubes, I have had to fly with portable oxygen (which is one of the most frustrating experiences of my life), and I have been quite visibly unwell for extended periods of time.
A natural compassionate human response to suffering is to express desire for someone to be well and free from suffering. We tend to judge wellness by what we see externally. Many times, external appearance offers an accurate representation of physical wellness. Sometimes, however, looks can be deceptive.
My illnesses, in nature, are incurable. No specialist exists in my home town, or home state, who will take me on as a patient. Many doctors have expressed fear of touching me with a ten-foot pole. They have verbally acknowledged that they are “afraid of killing me.” One individual who currently works with me on nutrition warned a homeopathic doctor saying, “If you are not careful, this patient could die under your care. Seriously.” Wisely, the doctor decided to take three days to fast and seek the Holy Spirit before taking me on as a patient, and bravely, she decided to see me. Unfortunately, her care was too expensive, as insurance does not cover homeopathic medicine, even for patients who find themselves at dead ends with Western Medicine. Therefore, we find ourselves treading water, trying to keep my head barely above the surface, stay out of the hospital, live the fullest life possible, and pray that someone raises enough funding and awareness for clinics like Vanderbilt to find a cure, or at least, a concrete cause for my cluster of illnesses. As of now, however, we have tried most options (that we can afford), and I have been forced to become my biggest researcher, doctor, and advocate. That is a tough job when you have been declared totally and permanently disabled and are trying to raise two children.
In addition to being incurable, my illnesses also show up in ways that many sufferers refer to as “flares.” There are times, or seasons, when fewer symptoms show up. The pain and suffering is kept to a lower roar. We are constantly trying to create or find environments that offer less stress on our immune systems, create a greater state of homeostasis for our systems, and offer us the best chance at a normalish life (and by normalish, I don’t mean normal at all. I mean very sub-normal, but at least we don’t feel like we are dying all the time).
October through April are notoriously horrible months for many POTS patients. Another patient referred to it as the “October slide.” I immediately knew what she was talking about before batting an eye. For me, my decline seems to accompany cooler weather. With a disregulated autonomic nervous system due to dysfunction of the vagus nerve, my body is unable to maintain body temperature. Evidently, bodies have an easier time cooling down than they do warming up. Thus, when winter comes around, my body goes into panic mode, trying to warm itself up to no avail, and thus, burning way too many calories, making me progressively sicker until spring begins to thaw out the earth (and my frozen body). As a result of this, I try to “fatten up” through the summer, just like a bear preparing for hibernation! Doctors have encouraged me to move somewhere more temperate year round, but this would be difficult as a spouse of a UMC pastor under the appointment system.
Flares can result from a seemingly innocuous event. A month ago, I caught a 24-hour stomach bug, which triggered a flare in my body. Long after the stomach bug was gone, my body was unable to re-calibrate my elevated body temperature, and I wrestled with a chronic mid-grade fever that lasted three and a half weeks. In addition, my medications that regulate my hyper-adrenergic state and tachycardia due to the POTS stopped working. I was at the mercy of the “flare” until my body could finally re-adjust just a few days ago.
In the realm of medical devices, sometimes appearances can be deceiving. In my most recent Oximetry test (the test that the company in charge of oxygen supplementation devices requires patients take once a year), I “qualified” for daytime and overnight oxygen. This means that I should probably wear oxygen 24-7, but I choose not to. I know it’s not the greatest decision, but I have found that medical equipment is quite a morale killer. I can’t handle the pitiful stares, the extra stress carrying around oxygen canisters places on me and my family, and the stigma that comes with medical equipment. I don’t need lectures (or maybe I do–save those brain cells!!). But, really, it is emotionally excruciating to be in public with the tubes connected to my face, as I pull behind me the oxygen tank on wheels. Not the greatest accessories that I have ever donned.
As far as the removal of my feeding tube, we decided 6 months into my tube feeds that the continuation of the feeding tube was not sustainable. With MCAS, our bodies react to so many triggers, that every single formula triggered massive reactions in my body. I went through about five different formulas, most elemental, hypoallergenic, and as broken down as possible. I have never been so unbelievably sick as I was when I was on my tube. I have recently discovered that the whole experience resulted in PTSD. Even though the tube feeds made me horribly sick, they did bolster my weight, and therefore, my team felt that it was acceptable to have the tube removed. I did not have it removed because I no longer needed it, but because it proved to be more of a problem than a help. I am now making myself sick with food via mouth, rather than food through a tube. At least I can enjoy the taste, and I can be more aware of exactly what goes into my body.
One reason that we discontinued the saline infusions was because my body reacted to them. I would develop fevers, rashes, and body aches for hours after each infusion because my body was reacting to some part of the infusion process, whether it was the actual saline, or the process of the infusion, we never found out. I had my port removed because we deemed the infusions more trouble than they were help, and because of the risk of infection with a port in my body. Also, because of a change in insurance, I was unable to receive home infusions. Finding rides so frequently to the infusion center proved to be difficult, especially because I was on the fence about whether they were doing more harm or more good.
The most recent development has been my choice to use the wheelchair as little as possible. I am an ambulatory wheelchair user. This means that I can walk, but I need the wheelchair because I pass out frequently. This, like the other choices, has been a choice based on careful weighing out of the lesser of two evils. When I am constantly sitting in the wheelchair, my hands and feet begin to burn and go numb. In addition to that, my digestion is further slowed due to the position of my body, so my GI issues increase ten-fold. I already have gastroparesis, so further delay of digestion is unbearable. Unfortunately, I still pass out. I still cannot stand for long periods of time. I am still weak and would benefit from the wheelchair if I had a better one, or if sitting in the wheelchair didn’t cause so many other dangerous and uncomfortable issues. When I use the wheelchair at this point, it is an absolute last resort. I use the wheelchair when I absolutely cannot move without it, knowing that using it will create other very uncomfortable and painful issues for me.
I share all of this because I have a lot of people who see me out of my wheelchair and disconnected from medical devices, and they excitedly express that I must be better. It is a rational assumption based on what we know about most medical illnesses. Unfortunately, it is not true for me. I’m still quite sick. Unless someone comes up with a miracle cure, or God performs a miracle on my body, I am not getting better. I’m trying to accept that and move forward with my life. We continue to pray for healing, I continue to advocate for myself with whatever energy and strength I can muster, and we continue to assess what treatments, medications, and medical devices will help at each point.
I am not trying to be “Debbie Downer” when I explain that I am, in fact, not “better” because I am not in a wheelchair or toting portable oxygen or a tube-feed backpack. If I am being completely honest, I would probably feel better, communicate more clearly, and be a bit more coherent if I were wearing oxygen. If I were sitting in a wheelchair, I would be able to think more clearly and engage in more conversations because I would have more blood flow to my head. My months of tube-feeding, in my opinion, did more damage than they did good. Also, I would be in a wheelchair if I didn’t have these really awful complications with nerves, digestion, and overwhelming pain. In fact, I am paying heavily for this more “normal look” that deceptively tricks everyone into thinking that I’m A-okay. Yes, folks, my pride and self-image are tripping me up. I’m not actually better. I ruefully admit that I’m really just incredibly stubborn.
When you see me leading worship on the stage, seated, it doesn’t mean that I am feeling better. Worship is my lifeline, my escape, my sanity. The opportunity to lead worship on Sundays is the absolute spiritual and emotional highlight of my week. I can get lost in the presence of the Holy Spirit and taste heaven for half an hour, and for once, forget the pain and the suffering in the blinding light of glory. I worship in the pain and the suffering. It is my act of obedience, and it is salve for my weary soul. Without worship, I don’t believe that I could hold up under the heaviness of the suffering. While it soothes my soul, my body does not respond well to it. Sometimes, a song can trigger an allergic reaction: I get too excited, releasing more adrenaline than usual, thus tripping up my mast cells, which then dump ridiculous amounts of histamine throughout my body. I usually have to take benadryl in order to lead worship without an allergic reaction. I always pay physically for the choice to lead in worship. I go home and sleep for hours, sometimes paying up for 48 hours afterwards.
I am explaining my worship experience because looks can be deceiving. I love leading in worship for our church. It is my favorite thing to do. I engage in it knowing that I will face physical consequences. I have weighed out cost-versus-gain, and consider the emotional and spiritual reward to be greater than the physical loss. Every action that I take and activity that I engage in requires that I consider how much it will cost me and if it is worth the cost that I will have to pay. This is called the spoon theory.
In the ideal world, if everyone understood the ins and outs of my illnesses, and if I could communicate what I needed from the people that I come in contact with, others would respond differently to seeing me “ambulatory” and disconnected from medical devices. I don’t wish to have to decide whether I should take the time to explain to someone that I am, in fact, not better, or if I should just nod my head and let them think that I am as well as I seem. (Depending on the situation, I respond in both of these manners). I would somehow download the knowledge into everyone’s head that I am not getting better, and I just want to be loved, listened to, and cared for. My illnesses are central in my life because they affect every minute of my life, so I don’t mind people asking about how I’m doing or feeling. I just don’t need to be reminded how “well I look,” because usually, I am putting on an act to make people feel less uncomfortable around me. Ninety-nine percent of the time, when I am in public, using energy to stand, socialize, and do normal activities, I feel pretty darn awful physically. In conversation and relationships, I simply want to be known, loved, and accepted, just like everybody else: healthy, well, and in between. Not every conversation has to be about how “well I look,” or even how I’m doing physically.
With that being said, I understand that everyone is doing the best that they can. I would rather have conversations with people who are well-meaning but happen to say “the wrong” things than be avoided altogether.
And truly, if I am being honest, when I am feeling the crappiest, absolutely anything you say could potentially be the “wrong thing.” I can be super grumpy when I feel like garbage.
I’m sorry, my friends, sometimes you can’t win. That’s not fair for you. It sucks. You can bow out if it is too hard. I wouldn’t blame you. I’m tough to be in relationship with. I would not know how to talk to some with the medical truckload of crap that I have unless I had walked in my shoes. I know that it can feel awkward at best, and at worst, some people might have a hard time believing in the legitimacy of “invisible illness.” So for those who care and just don’t know what to say, ask questions. Feel free to express your confusion, reservations, and points of uncertainty. As someone who is going through this, it is a nightmare to navigate. I can’t even begin to imagine what it looks like from the outside looking in.
Life’s rarely cut-and-dry. Broken humanity is housing more pain and agony within our hearts, minds, and bodies than anyone can see with the naked eye. Assumptions can be pretty dangerous for any of us. But allow me to be one who can take you by the hand and give you a tour of what isn’t visible inside of me and probably inside of others who struggle with chronic, incurable diseases.
But if you don’t know, ask. Assume we have the same needs as you: Community. Care. Support. Friendship. Time. Love. Belonging. Acceptance.
Say the “wrong things.” It’s okay. Just keep talking to us. Just be present. Presence goes a long way.